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| | | |-+  From the Chair - what it's like
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Author Topic: From the Chair - what it's like  (Read 17123 times)
Zach
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"Still crazy after all these years."

« Reply #25 on: July 25, 2008, 08:08:28 PM »


They could have put in an IV that required keeping an arm dead straight for four hours, just to provide a bit more authenticity to the experience ...


Excellent addition!
 
8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
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My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
twirl
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« Reply #26 on: July 26, 2008, 01:01:25 AM »

don't even

get back with me
----- when you have real needles stuck in an already sore arm, when you have to poo and the techs are too busy or too uncaring to let you off, when you are gagging or vomitting, when your butt has been sore for three hours already, when it is time to get off and you have to sit there for extra time, when you know you will be back again and again and again, when you are treated like G-Ma was and you feel humiliated, when everyone on your shift knows more about your medical condition than your spouse does, you cramp, you infiltrate------
then we can talk
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Kitsune
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Sometimes the dragon wins.

« Reply #27 on: August 13, 2008, 12:33:03 AM »

Yeah, this social worker doesn't know jack about being on dialysis. She merely sat in chair for four hours with needles taped to her arm and 4 bags of saline on her.

She knows nothing about being treated like a child by condescending staff, or about monthly doctor visits, or the fear that she will die on the machine, or having needles in her arm, or about having to go to the bathroom so bad your teeth float while the tech refuses to let you off because they're convinced you'll "dawdle", or the vomiting, or the cramping, or the loss of libido, or having to go there 2-3 times a week, knowing that you'll probably die before too long because you have a rare blood type and few people of that blood type are donating kidneys, or the renal diet, or having your BP drop so low or go so high that you feel like you'll die, or the dry throat you get from dialyizing, etc.

But, she sat in a chair with saline on her body, needles taped to her arm and books to read. Yeah, she gets it, uh huh. :sir ken;
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monrein
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Might as well smile

« Reply #28 on: August 13, 2008, 12:45:54 AM »

I really want my nurses to try to understand what we go through and I feel that the ones in my unit do "get it".  They've been in the field a long time and are extremely sympathetic to our plight and treat us (even the not-so-great ones of us.....and yup nasty, rude, miserable  dialysis patients do exist too, although I don't necessarily blame them for this) very well indeed.  I don't want them to be sick or on dialysis so they'll get it more.  I don't want anybody to be on dialysis.  Not me, not anybody.  I want bad techs and nurses fired, not dialyzing next to me.  A good social worker, doctor or any person doesn't have to have first-hand experience with every situation to "get it".  They just have to keep on trying their level human best to make things as easy for me as is humanly possible and they also have to be competent, conscientious and committed to continued learning in the renal field.


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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Chris
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« Reply #29 on: August 13, 2008, 02:12:15 AM »

Why not one of those temporary Quinton Catheters. May not be needles, but will giver her some feeling of the processes. Then they could use it as a PR tool. Also could inserted an I.V. of Saline, heck make it two and put it by they elbow so if she moved, the IV alarms will go off.
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   -glaucoma and surgery for that
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     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
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No two day's are the same, are they?
twirl
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« Reply #30 on: August 13, 2008, 03:18:21 AM »

if my butt could talk --- during the 3rd-4th hour ----- would she get an ear full-----
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pelagia
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« Reply #31 on: August 13, 2008, 06:09:08 AM »

What can be done to change the system?  There is strength in numbers and this is a big community.  A campaign focused on legislators?  I am happy to help in any way I can.  I don't have first hand experience with dialysis, but I have taken issues "on the Hill" and I can do research and write talking points.  Can anyone here imagine an IHD meeting in the DC area with individuals visiting their congressional representatives to discuss these issues? 
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
okarol
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« Reply #32 on: March 28, 2009, 09:09:00 PM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #33 on: February 25, 2010, 03:38:11 PM »


This has been on the forum for awhile, bumping it up. :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
galvo
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« Reply #34 on: February 25, 2010, 06:55:47 PM »

A nurse said to me the other day "We know what you're going through!". Oh Yeah!!!!!!!!!!!!!!!!!
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Galvo
calypso
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« Reply #35 on: February 26, 2010, 11:35:45 PM »

I would have been more impressed if they had made it a bit more realistic. As in made the pseudo patient donate some blood through two 15 gauge needles.
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monrein
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Might as well smile

« Reply #36 on: February 27, 2010, 04:59:39 AM »

I would have been more impressed if they had made it a bit more realistic. As in made the pseudo patient donate some blood through two 15 gauge needles.

Except that I don't think you could shove 15 gauge needles into a vein and the arteries are too deep to access.  I think that creating a fistula in someone not needing D might be a tad extreme.....no?
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #37 on: June 29, 2010, 12:43:13 PM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #38 on: July 17, 2010, 07:30:28 PM »

I don't think it was a bad idea, I mean, she did say that it wasn't completely authentic, but it is more than a lot of dialysis workers will do.  I intend on printing this and giving it to the nurses at my unit.  I think they would actually enjoy it, and probably take it's message to heart.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
okarol
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« Reply #39 on: November 01, 2010, 04:37:47 PM »

 :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Karlise13
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« Reply #40 on: March 19, 2014, 12:07:01 PM »

I have so much respect for the social worker who put herself through this.  During my training (I am a renal dieititian) they had us do an exercise where we had our dominant arm taped to the table. We had to keep it in that position for a half hour. That doesn't sound hard at all, right? During that half hour I was DYING to move my arm. Tell someone they can't do something and they immediately start thinking about it! Suddenly I had to scratch my nose, I wanted to write notes, I just wanted to MOVE. Having my arm taped down taught me a lot about how uncomfortable it is to keep still for even such a short time. The fact that the social worker actually sat for four hours in a dialysis chair, on her day off, makes me think. This should be required reading for all staff who work in a dialysis center.
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cattlekid
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« Reply #41 on: March 19, 2014, 02:40:54 PM »

Here's what I think training should be for a renal dietitian, based on the experiences I had with my dietitians:

Two months on the renal diet, bonus points for diabetic renal
One of those months should be over the Thanksgiving/Christmas holidays, bonus points if you travel or have family visiting
You have to continue to work full time during this period, plus you have to block out 12 per week hours for the time you would be at dialysis, plus at least 10 hours for sleep on the dialysis days (3 days a week, you can include your regular sleep time on those days but the total has to be at least 10)
You must do all of your own planning, shopping, cooking and cleanup
No restaurants, no prepared foods. 

If you can do all this without cheating for two solid months, then you are ready to be a renal dietitian.

I have so much respect for the social worker who put herself through this.  During my training (I am a renal dieititian) they had us do an exercise where we had our dominant arm taped to the table. We had to keep it in that position for a half hour. That doesn't sound hard at all, right? During that half hour I was DYING to move my arm. Tell someone they can't do something and they immediately start thinking about it! Suddenly I had to scratch my nose, I wanted to write notes, I just wanted to MOVE. Having my arm taped down taught me a lot about how uncomfortable it is to keep still for even such a short time. The fact that the social worker actually sat for four hours in a dialysis chair, on her day off, makes me think. This should be required reading for all staff who work in a dialysis center.
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okarol
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« Reply #42 on: March 29, 2014, 07:23:48 PM »

Here's what I think training should be for a renal dietitian, based on the experiences I had with my dietitians:

Two months on the renal diet, bonus points for diabetic renal
One of those months should be over the Thanksgiving/Christmas holidays, bonus points if you travel or have family visiting
You have to continue to work full time during this period, plus you have to block out 12 per week hours for the time you would be at dialysis, plus at least 10 hours for sleep on the dialysis days (3 days a week, you can include your regular sleep time on those days but the total has to be at least 10)
You must do all of your own planning, shopping, cooking and cleanup
No restaurants, no prepared foods. 

If you can do all this without cheating for two solid months, then you are ready to be a renal dietitian.



 :2thumbsup;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jean
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« Reply #43 on: March 29, 2014, 11:32:44 PM »

Karol, thank you for keeping this post alive. I learned a lot just by reading it. Wonder what happened to the SW who sat in the chair. Too bad it is not on the training list for all dialysis workers.
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One day at a time, thats all I can do.
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